Introduction PPI is increasingly accepted in palliative care research but there are challenges with involving this vulnerable population (Chambers 2019; Gott 2004). The OPEL study looked to integrate PPI in the study, incorporating elements of co-production.
Aims The study aim was to determine features of HAH models that work, for whom, and under what circumstances (Butler 2017). It was developed in partnership with public members. Two were former carers with experience of hospice services and became part of the research team (co-applicants).
Method We combined a realist evaluation with PPI/co-production: phase 1 – was a national survey to map HAH service models; phase 2 – quantitative and qualitative data collection within identified service model case studies; phase 3 – national consensus workshops with stakeholders. The study team included a hospice based Research Facilitator with a dedicated role to support PPI.
Results The public co-applicant’s input included: sharing decision making, joining meetings, advising on public facing documents, co-facilitating consensus work, contributing to project analysis and reporting the findings. They were involved in data interpretation as equal stakeholders e.g. coding interview transcripts, commenting on the emerging context-mechanism-outcome configurations (CMO) which were integral to the realist evaluation approach (Pawson 1997). The importance of having a dedicated facilitator to support the public co-applicants was highlighted.
Conclusion The public co-applicants, with dedicated support, provided a different lens to the iterative process of refining CMOs, enhancing rigour. PPI and co-production contributed to the success of the study.
Impact This study highlights the benefits and feasibility of PPI and co-production for palliative care research. The realist approach was a good fit with co-production, valuing the complexity of a multifaceted intervention and representing all stakeholder perspectives.
We recommend early discussions to identify: activities public co-applicants would like to participate in, training needs, support requirements, time commitment and the emotional demands of the work.
ButlerC, Brigden C, Gage H, Williams P, Holdsworth L, Greene K, Wee W, Barclay S, Wilson P. Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation. BMJ Open. 2018. BMJ. doi: 10.1136/bmjopen-2017-021192.
Chambers E, Gardiner C, Thompson J, et al. Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review. Palliative Medicine 2019;33(8):969–984.
Gott M. User involvement in palliative care: rhetoric or reality? In Payne S, Seymour J, Ingleton C, editors. Palliative care nursing: principles and evidence for practice, 1st edn. Buckingham: Open University Press; 2004. pp. 75–89.
Pawson R, Tilley N. An introduction to scientific realist evaluation: Sage; 1997.
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